Watchword: Advocate!

On October 1, 1999, Body Positive, Inc., held the second of its annual conferences bringing together providers and consumers of HIV/AIDS-related services. Entitled "Integrating a Spectrum of HIV/AIDS Therapies: Maximizing Benefits of HAART with Complementary Care," the conference was designed to focus attention on the need for a multifaceted approach to dealing with HIV/AIDS.

The full-day conference brought the issue of integrative medicine to a diverse audience that included people living with HIV, medical practitioners, nurses, practitioners of complementary and alternative therapies, nutritionists, social service providers, and others. Our intent is to keep our lens focused on the need for increased attention to an integrative approach to HIV/AIDS, one in which complementary and alternative medicine -- CAM -- is at least as logistically accessible as a visit to a hospital emergency room -- and a lot more convenient and comfortable. Our aim is to promote practical strategies for creating and integrating quality healthcare that addresses all aspects of health and well-being, and for making it accessible to people with HIV and AIDS.

This article is the second of a three-part series presenting some of the highlights of the October 1 CAM conference. Unfortunately, space does not permit us to reproduce all of the valuable comments offered by speakers, panelists, and workshop leaders at the conference. If you would like a conference folder, or further information about any of the panel topics or workshops that you read about here, please call Rachel at the BP office, (212) 566-7333.

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The complexity of the issues involved in developing an integrative approach to HIV/AIDS care -- indeed, those surrounding HIV/AIDS in general -- were explored by the morning's first panel, consisting of healthcare professionals and consumers (see Body Positive, December 1999). The discussion then moved from the personal to the political with the introduction of individuals active on the national stage -- one a government insider, the other a representative of a national AIDS organization. From both, the message was clear: Talk to the policy-makers. Share your experience and expertise. In short, advocate!

The Insider's View

Todd Summers is the current Deputy Director of the Office of National AIDS Policy at the White House and a former AIDS advocate in Boston. In arguing for advocacy on a national level, he stressed three important issues: the current state of AIDS policy; some directions in which national AIDS policy is moving; and the extent to which CAM is going to be included in standards of care, and as such, financially covered by federal funding programs.

Summers summed up the situation in Washington: "There's a lot of policy work that remains to be done, and we are probably not firing on all of our cylinders in terms of the federal response to this epidemic. The numbers of people involved [in policy work] are dwindling, and the issues that we are involved with right now are very tough, both from a public health perspective and a political perspective. There aren't enough people engaged in those tough discussions, and pushing us in the right way." While Summers's words regarding the current state of national AIDS policy were not terribly encouraging, his statement certainly forced the audience to wake up and take notice of the importance of national discussions to the accessibility of CAM treatments in our local area.

According to Summers, the three major themes in AIDS policy today are access to treatment; the disproportionately severe effects of the epidemic on communities of color; and a shift toward local-level decision-making about program development and funding. He noted that these directions have both positive and negative aspects. For example, local-level decision-making to confront local challenges is a sensible and appropriate approach; however, this devolution of power to the local level has also resulted in the federal government adopting a hands-off approach to AIDS, "even when maybe we should step in and be a little more forceful when people aren't doing the right thing" in local communities.

Most important to this audience, however, was his statement that there is increasing awareness and attention to CAM therapies in even some of the most traditional -- even stodgy -- parts of the government. This only underscores that the time to organize as advocates on this issue is now.

Summers highlighted several issues with which CAM advocacy should deal:

Individuals and organizations alike need to continue to press policy-makers -- a group in which he included
himself -- for continued attention to CAM. Summers acknowledged that policy-makers like himself are experts at delaying change, and insisted passionately that advocacy work is critical to overcoming that resistance. In his words, Washington "doesn't hear as much from people with HIV as we used to in the old days, and voices need to continue to get raised. Nothing gets moved in Washington unless there's a wheel squeaking, so don't let the system intimidate you. Come to Washington. Yell and scream at us and tell us what to do."

Federal funding policies need to change, to include treatments and services other than those directly related to Highly Active Antiretroviral Therapies (HAART). What should be provided, and what are the mechanisms that could help to provide those things? Policy-makers need to hear from providers and consumers.

Fraudulent claims of "across-the-board" and "alternative" treatments remain relatively common. Not only might these therapies not help people, they are often dangerous. It's critical that we fund research to prove the efficacy of certain treatments and to expose the danger in others. Scientific validation for CAM therapies is critical in order to redirect program funding to CAM.

The Advocate's View

Terje Anderson, Director of Policy at the National Association of People With AIDS, offered an advocate's good-natured counterpoint to Summers's "government line." Although his perspective was somewhat different from that of Summers, Anderson made a similar plea for audience members to get involved in the fight to legitimize integrative medicine -- both in the short and the long term, at both the local and national levels.

Anderson prefaced his talk by saying that the subject is particularly meaningful to him, a pharmaceutically naive person living with HIV. He also honestly admitted that none of the national AIDS advocacy groups -- including his own NAPWA -- is carrying out any substantial activities or policy work related to CAM therapies. In his words, "there is probably no other issue that further separates the reality of what's going on at the grassroots from what's going on at the leadership in the national AIDS movement and what's going on in the government." Despite the fact that there are large numbers of people with HIV -- in fact, probably a majority -- who use CAM in some way, shape, or form, this utilization is simply not acknowledged at the national level, nor has the issue made it onto any advocacy agenda in a sustained way.

Anderson offered his views on why this issue is being sidelined in Washington, and outlined some of the obstacles to making CAM a part of national AIDS policy discussions.

Regarding the current state of affairs at the federal level, Anderson noted that people in Washington are currently engaged in a struggle to make all primary healthcare accessible to all people with HIV -- an outcome that has not yet been achieved and therefore deserves a place of primary importance on our policy agenda.

Because of this, the reauthorized form of the Ryan White CARE Act (the current Act expires in September and must be reauthorized by Congress in the coming months) may leave gaping holes in service provision. Anderson noted that NAPWA is fighting "just to defend services [in the Ryan White Act] that make an impact that's favorable on the quality of people's lives." Transportation, childcare services, and mental health services risk being excluded from this year's reauthorized CARE Act, because "there are forces out there that want to turn this legislation and the funding mechanisms associated with it into a way of paying the bills for doctors and drug companies." While the Ryan White Act has an essential role in that process, that role must not become its sole function.

In addition, people don't yet feel knowledgeable enough about CAM to think of it in terms of policy. Because policy-makers, and even national advocates, know so little about the subject, CAM ends up getting defined by many people "not as a core part of access to care, but as a luxury, as something we'll deal with after we take care of those other basic issues." Anderson insisted that "we're going to have to figure out how we make that discussion recognize that integrative care is in fact part of the core access to care issues, and it's not about luxuries or special services."

Anderson then moved on to offer some short- and long-term strategies to meet and overcome the challenges he had just defined.

In the Short Term

First, according to Anderson, people should look at local opportunities:

Identify and maximize current opportunities to use existing care structures, such as ADAP and the current Ryan White CARE Act. For instance, it is totally permissible under the current legislation to fund services that provide information about all treatment options, including CAM. Use your Planning Councils to document the need for this type of information, and advocate for its inclusion at the local level. Once consumers have the information they need, they can begin to make informed choices about their treatment options.

The Health Resources and Services Administration (HRSA), the national agency that administers the Ryan White CARE Act, has created a group that has been meeting since spring of 1999 to develop standards for provision of the nutrition services it funds. People are beginning to recognize the complementary nature of nutrition along with conventional therapies. This creates a window of interest and opportunity, and we need to figure out how to take maximum advantage of it.

Two years ago, HRSA actually opened the door to the use of CAM a little by setting up guidelines for alternative therapies to be funded under the Ryan White Act. The guidelines are somewhat restrictive in that they don't look much at nutrition products, but more at services such as acupuncture. On the positive side, however, these guidelines do say that acupuncture and other CAM services can be paid for under the Ryan White Act when referral to these services is made by a physician. We need to train people how to take advantage of that clause.

In addition, creating Medicaid formularies is a state-level decision, not a federal one. Development of these formularies therefore can offer great opportunities at the local level.

In the Long Term

On a long term basis -- in ten to twenty years, that is -- Anderson encouraged
the audience to think about the wider question of creating universal access
to CAM-related programs. We must begin by working to build coalitions
with groups outside of the HIV community who are interested in CAM access.

As we work toward this coalition-building, we must:

Make sure that initiatives like the current NIH effort to document the impact and efficacy of CAM therapies are expanded. There need to be resources to support testing and documentation of new therapies in order to build support for them.

We must also take steps toward changing mainstream medicine's approach and attitude toward these therapies. Until that happens, we will not see an acceptance of CAM in federally funded programs. Doctors will remain the central point of access for determining what therapies people will -- and will not -- be able to use.

When we have made strides toward demonstrating the value of CAM and changing long-held attitudes, we can talk about how we can change federal and private reimbursement policies in order to make these treatments available to people.

Anderson's final comments effectively summarized all of the panelists' sentiments:

"I wish I could tell you that next week we're going to take care of all this. We're not. We're not going to take care of this next year. We're going to take little baby steps toward availability [of CAM therapies and services]. It's not going to move fast enough -- and we're going to have to figure out how to make it move faster."

Getting Involved

So much work needs to be done. There are so many good ideas for getting it done. And yet it sounds a bit overwhelming! What can we do today?
Remember, the first step in any process is always the most difficult. With that thought in mind, here are some ways to make that first step a little easier -- some small ways in which you can begin to get involved with advocacy for CAM in a personal and meaningful way.

Learn more about the "nuts and bolts" of CAM so that you can be a knowledgeable advocate for CAM access and utilization. Some sources of information include websites, publications, and agencies -- some of which are listed in the box on this page, and more of which will be discussed in next month's Body Positive, when we conclude our report on the October conference.

Start organizing your friends, fellow patients, and colleagues around CAM issues. Talk to your doctor and medical team about your interest. If you are a healthcare professional, mention the issue to colleagues and staff, and explore ways that you can put this issue on the agenda at grand rounds or staff meetings.

Get involved in the political process. Start locally and work your way up to the federal level. Document your work and help to make people's voices heard.

It's a Long Road . . .

Ironically, while this report on the CAM Conference is being prepared in New York (late October 1999), the Fifth International Conference on AIDS in Asia and the Pacific is being held in Kuala, Malaysia. Medical experts on that side of the world are railing against the unavailability of pharmaceuticals in the Asia Pacific region, and crying for more research and treatment of opportunistic infections.

Since the high hopes of Vancouver's 1996 revelations were not realized, Asian and Pacific Islanders are placing a renewed emphasis on seeking nonbiomedical treatments for conditions associated with AIDS. Home-grown healing methods are being explored and researched more seriously again: ayurvedic therapies in India; acupuncture and herbal medicine in China; therapeutic massage in Thailand. Meditation. Nutrition. Exercise.

The issue of access to treatments is a global one. In the United States, we are waking up to ideas about CAM because biomedical science has failed many HIV-infected Americans. And yet across the world -- from Haiti to Zimbabwe to the Philippines -- CAM is the only option. As difficult as this fight will continue to be, it's important to realize that we are a global community in this fight for accessible, holistic care. Our fight will be a long one, but it promises huge rewards.

Coverage of the CAM Conference concludes in the March Body Positive, where we will present the "nuts-and-bolts" issues discussed in the afternoon session.

Rachel Sacks, Co-Director of Community Outreach and Education at Body Positive, Inc., organized the CAM Conference.

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